Tuesday, May 19, 2015

We have been fighting tightness in Caleb's legs since he had tethered cord surgery 3 years ago. This was never a problem before but has been an ongoing issue since. His legs are never relaxed. Never. Even at night when he is sound asleep his legs are tight, so tight that I can't move them. It's like his nerves are constantly firing. The nerves just fire and his leg will shoot out uncontrollably. We have done everything we can to keep his legs from getting contractures. I use his KAFO's daily to get his legs as straight as I can for at least a couple of hours each day. I feel like I'm fighting a battle I can't win. I've noticed things have gotten just a little bit worse in recent weeks.

This cute toe is moving forward for some reason. The other toes are kinda curling downward. His big toe is super tight....it's weird.

The right leg is crazy tight. This is as straight as it will go and this photo was taken AFTER I had him stretched out with his KFAO's for two hours.

While the tightness isn't new, I do think it is worse even with everything we are doing to stop it. Caleb has even noticed that the tightness is worse and it is starting to bother him. Of course tethered cord is my first thought. So, I called his neurosurgeon and he said that tethered cord is a possibility. Caleb will be having a full MRI on June 3rd to see how things are looking. We'll go from there.

Wednesday, April 15, 2015

Every 6 months Caleb's physical therapist does a re-evaluation. Caleb's progress over the last few months is discussed and goals are reviewed. I've always hated therapy evaluations but I understand they are necessary for insurance. Therapists have to be able to show that there is progress and evaluations make that possible. Currently Caleb has a therapy goal of being able to walk in his KAFO's for 5 minutes without stopping.

Caleb can do it...but he hates it. He doesn't like walking with his KAFO's. He doesn't like walking. It's hard, awkward, and cumbersome. Honestly, it's not functional...it's simply walking for the sake of walking. He hates it.

As we are getting ready for a therapy re-evaluation next week and knowing that we will have to set goals, I asked Caleb if walking is important to him.

His answer without hesitation: No.

Walking is not important to him. He's 9 years old and I think he is old enough to be a part of his goal planning. He should get a say. And he says "no" to walking. I get it. I really do. Walking is really hard work for him. And he needs a lot of support to do it. Even when he was walking really well (before the tethered cord surgery 3 years ago....wow, has it been 3 years?!) he would choose his wheels over his walker when given the choice. After that surgery he lost everything. He had to start all over. He's had to work so hard to gain back even some of what he lost. I was hopeful that he would gain back the ability to walk but then weeks turned to months...and now years. I'm not so hopeful now. And honestly, I'm okay with that. I've never had a problem with his need for a wheelchair. I love his wheelchair. It is independence, speed, confidence and mobility. It is a blessing.

I'm okay if he never walks again. But I want him to be okay with that. I think he is. Walking isn't important to him. I respect that. I'm actually relieved to hear him say it. I feel like a weight has been lifted.

Monday, September 29, 2014

Most of you know that Caleb had tethered cord release surgery in April of 2012, so it's been about 2 1/2 years since his detethering. Most of you also know that prior to the surgery Caleb was standing and walking very well with just his AFO's and walker. And you also know that Caleb pretty much lost all function from the waist down after TC and it has been a long hard road of therapy and rehabilitation. Caleb still isn't where he was....and he may never be...but he continues to get stronger. I really wanted a way for Caleb to be upright for longer periods of time. He has KAFO's that he can stand in but he does fatigue quickly so I wanted something that would allow him to stand and move freely. I present the mobile stander!

This is a loaner that we received through our local SB clinic. Basically Caleb is strapped in and supported in a standing position. It allows him to be upright and mobile at the same time. Now this isn't our first time using a mobile stander....but as you can see, it's been a few years. :)

Oh my. I can't stand the cuteness of that chunky 18 month old on the left! When did he get so big? I blinked and he was nine. Seriously.

Caleb loves the mobile stander. He's spinning circles in this pic. I think he just loves being so tall and mobile at the same time.

Monday, July 01, 2013

Caleb had a MRI (brain and spine) last Friday. As expected he did fantastic. Such a trooper. He handles this stuff way better than I do. I went back with him to pre-anesthesia to watch as he went to sleep. This is not the first time I have seen him drift off to sleep and I suspect it won't be the last. I don't like it. The MRI lasted about 2 hours.

(enjoying a post-anesthesia popsicle)

I got a call today with the results of the MRI. Basically things look "stable", meaning there is nothing new to report. I am relieved and frustrated by this news. I am relieved that there isn't something major going on that would require more surgery. I'm frustrated because I still don't have answers. I still don't know why TC recovery has been so hard for him. I still don't know why we are 15 months out from surgery and he still hasn't gained back the function he had prior. Ultimately I'm thankful for a good MRI report...just wish I had more answers. Maybe I never will. Maybe I just need to be okay with where we are right now. It isn't what I would have wanted for him. I hate that this happened but it happened nonetheless. And the truth is, where we are right now isn't so bad. No, he can't walk right now and maybe he never will but I learned a long time ago that walking/not walking isn't a predictor of a good life. So we press forward, we keep climbing our mountain. I'll continue to be Caleb's number one cheerleader.

Thursday, June 27, 2013

Last week Caleb had a neurosurgery appointment, just a follow-up to see how he is doing. The neurosurgeon was surprised to see how weak Caleb's legs are 15 months after tethered cord surgery, especially his right leg. I asked the doctor how common it was for a child who was ambulatory prior to TC surgery to lose all function and not gain it back. He said it was very rare. Which is why I think he is so concerned about Caleb's lack of progress. He wants to make sure there is nothing else going on, nothing else that could be causing or contributing to Caleb's lack of function. So, he ordered a full MRI (head and spine), as soon as possible. Caleb has the MRI tomorrow morning. Caleb will be under anesthesia since the scan takes about 2 hours. Please pray for Caleb, that he wouldn't be anxious or fearful. He always does great with anesthesia and is such a trooper so I don't expect any surprises tomorrow...but prayer is always appreciated. I don't know what the MRI will show. I'm trying not to play the "what if" game right now because my mind goes to some pretty bad places.

Wednesday, April 03, 2013

Wow. Has it really been a year already? I just need to let that soak in a bit. It has not been an easy year, and the truth is that Caleb is not where I expected him to be. I never dreamed we would be a year out from surgery and he still wouldn't have gained back the function he had prior to surgery. That stings a bit...it's been stinging for a year now.

I remember sitting down with Caleb a couple of days before he was scheduled to have surgery. I explained to him the reasons he needed surgery and I promised that the surgery would help him. I told him that the surgery would help him walk better. I feel like I mislead him.

I didn't know he would have to start all over. I didn't know that he would lose everything that he had worked so hard to gain. I wasn't prepared for that. I didn't prepare him for that.

I just told him what everyone had told me. I was told that the recovery would take weeks, not months, and certainly not a year. I wish I had been better prepared for what could be. I wish someone had told me, had prepared me, so that I could have done a better job at preparing him.

Despite the fact that we had to start at the bottom of the mountain, despite the fact that we have already climbed this mountain before, Caleb has been a trooper. He always has been. He has pushed through physical therapy 3 times a week. Every week, for the past year.

He works hard. He may not be where he was and he may not ever gain back the function he had. But let me tell you, it isn't for lack of trying. He has given everything he has. I am in awe of him.

Monday, February 11, 2013

It has been almost a year since Caleb's tethered cord surgery, almost a year since I have seen him walk. Thanks to the knee immobilizers, he is walking. Just a little bit at a time, but he is able to walk.

I know many of you saw this on facebook already but for those of you that haven't....

I think I am more excited than he is. He told me today that "walking is boring". I guess it is boring to him because I've just had him walk around the living room with no purpose. Plus walking is slow and it is hard work. Hopefully he'll feel encouraged as his legs get stronger and his endurance increases. I'm just thrilled to see him upright. I don't think I realized how tall he was until I couple of days ago. He has definitely grown in the last year.

Tuesday, February 05, 2013

A few weeks ago I came to the conclusion that Caleb needs more support to walk. He has worked so hard since his tethered cord surgery last April (seriously, I can't believe its almost been a year already). He has given it all he has but AFO's just aren't enough to support his legs for walking. At least not right now. Today he had an appointment with his orthopedic doctor to talk about our options for getting Caleb up and walking a bit.

Playing video games in the waiting room. He was playing some game with a skateboarding wolf. He loved it. I had to pry him away when they called us back.

Doing what I call "wheelie spins". He does a wheelie and then spins really fast in a circle while maintaining the wheelie.

He spins crazy fast!

Anyway, back to the ortho appointment. I had every intention of getting him fitted for KAFO's today because I am certain he will be able to walk if he just has more support in the knees. The doctor had a different suggestion...knee immobilizers. I have heard of these and our friend's son with SB walks pretty well with them. The argument for the knee immobilizers instead of KAFO's is that the immobilizers are lighter so they won't add extra weight to Caleb's legs making it harder for him to walk. They want to see how Caleb does with the knee immobilizers first. If he does well with them, then we go back and get fitted for KAFO's. It seemed like a fair compromise so I agreed.

I don't really know how to describe them. Basically the immobilizers wrap around his leg, offering support and stability. You can fit them tight for more support or loosen them for less. Pretty basic design and easy to put on. He can't bend his legs at all in them so these can only be used when we are specifically working on standing or walking. He can't really get around on the floor with these on.

They worked great. Caleb has been dependent on his arms to hold all his weight when he tries to use his walker. He will complain that his "arms are getting tired" because he uses them to hold up his weight. These immobilizers almost forced him to put pressure through his legs and feet.

I know the immobilizers were working because after walking around a bit, Caleb complained that his "legs were getting tired." That was the first time I have heard him say his legs were tired. That means he was actually using his legs and not relying so much on his arms. That's a good thing.

I think the immobilizers will force him to put pressure through those feet and legs. I think he will start using muscles he hasn't really been using. I'm excited. I think he was pretty excited too. Man, that kid works so hard. Love that booger.

Friday, January 11, 2013

Things have been pretty quiet around here this past week. The boys started back at school so it has been an adjustment getting back into the routine after 2 weeks off. Caleb was excited to be going back to school...Benjamin, not so much. Benjamin just doesn't like being separated from me and school (even though it is only for 5 hours, two days a week) means separation from mommy.

Caleb had an exciting event happen yesterday before school. He lost tooth #7!

Posing.

I'll go ahead and give a quick Caleb update. It's been over 10 months since his tethered cord surgery. April 3rd will be one year. I can't believe it's been almost a year since the surgery. In some ways the time has gone by so quickly, even though the progress has been so slow. Yesterday he came home from school, crawled over to his walker, managed to get to standing, and he tried to walk. He took about 2 steps before his knees just buckled and he fell to the floor. I hate that he wants to walk, but his body just won't let him. And he has worked so hard the past 10 months. Physical therapy 3 times a week folks, the boy works hard. More than being a hard worker, he is a trooper. He takes it all in stride. He keeps smiling even when he is struggling. He amazes me. After watching him fall yesterday when trying to walk, I decided that he needs higher bracing. His hips are so strong, maybe the strongest I have ever seen, but those knees just need more support. I know he could walk with KAFO's. So after discussing it with his therapist, we both agreed that KAFO's would be a good idea. It doesn't mean that we give up on him getting back to where he was prior to the surgery. I don't know if he'll ever get back the function he had. I just want to give him the option of walking. Right now that isn't an option. So, I'm waiting to hear back from ortho to get an appointment scheduled. Hopefully we can get him fitted for some KAFO's within the next few weeks, and get my boy walking again.

And just because he's cute, here are a couple of pictures I took of Benjamin today. We were doing a bit of shopping at "Hobby Lobby" and he was being a bit silly.

I love that he still likes to ride in the cart even though he is getting too big for it.